Looking ahead after Tymlos: Reclast, Evenity or HRT?

@seh801 Yes, there sure is a lot of information here! It certainly sounds like you're in good hands, and that plus your choice to be proactive puts you in an ideal position.
It's always good to ask what is the long-term plan, and if any of the options available would preclude you from being eligible to use certain others in the future. Let us know how your next appointment goes - it will be very helpful for us to be able to follow your journey. Best wishes!

@wondering1
Thank you for the link to Midi. I am on Medicare now so looks like I will pay on my own if I go with them. I'll keep that in mind if I strike out finding other doctors here who will work with me.

I procrastinated in starting Tymlos for 9 months. After I finally did start it took time to adjust to side effects which are also a very individual thing. I figured out that for me first thing in the morning with plenty of fluids helps the heart palpitations and occasional chest/shoulder/neck pain. Keeping hydrated eliminates those about 90% of the time. It's a process.

I had a DEXA today after almost 18 months on Tymlos (3 weeks left). My spine score was originally -3.2 and it improved to -2.4, which got me to osteopenia! My hips aren't as bad, but only changed from -1.9 originally to -1.8. My rheumatologist said she didn't see much improvement in people after 18 months on Tymlos, so suggested I stop when I finish out this month. We discussed all my options, and the conclusion is Reclast. I'm nervous about side effects, but we had a thorough discussion and I think it's the best option for me. She said I might be able to have only 1, but probably 2 infusions and then stop meds for a while. I thought this part was interesting - she said sometimes when people have taken alendronate your body "remembers" it and the side effects aren't as bad. I took it for 3-4 months but had to stop due to GI issues. She also said I could add Evista if I want to (now I have to research that, lol!) - I had asked her about HRT in our discussion of all my options.

I posted this earlier, but I'm 60 (will be 61 in a week & a half), and active. I do strength training 2x/week + Pilates 1x/week and walk a good bit, although not as much as I should & not enough in winter!

seh801, excellent results with Tymlos. Some do take a third year of Tymlos. I think it has barely started on your hips. If your md runs bone markers, you might give it try until the markers warn you to switch. Reclast can be very effective. You are less likely to have negative effect if your don't have autoimmune diseases and if you have a longer infusion. 4mg are know to be as effective as 5mg with Reclast. Hydration, tylenol and antihistamines are advised. Did you have side effects with Tymlos.

@seh801 Great improvement on the Dexa! Congrats! I know it will be a relief to me when I break past the -3.0 number.

You mentioned you had taken Alendronate in the past. Was that before the 18 months on Tymlos? Hoping Reclast works for you without any side effects. Please post how it goes for you.

I will be having the next steps conversation with my endo next Feb. In the meantime I'm still waiting for several appts to happen to look into HRT. Did your Dr suggest to add Evista instead of going on HRT? Or say why it would be better to take this instead of bioidentical hormones? So many factors to consider with all of this!

Good luck with the Reclast infusion. Take care!

@gently She doesn't do bone markers, and honestly I forgot to ask specifics about it! She spent about 45 minutes going over all of my options/answering questions & I got lots of info. I took notes, but missed some things. It's at an Osteoporosis Clinic in a research hospital, so super-specialized. She said their infusion clinic is only allowed to do what the FDA recommended dose is, but they do slower infusions, which she said they've seen is helpful. As far as side effects, when I first started Tymlos I had random mild left upper quadrant pain, but not sure if it was from the drug, or that I added Pilates to my 2 day/week training schedule around that time. I always had the rapid heartbeat, but it only lasted a few minutes, and was very mild. I did find the Tymlos patient support helpful when I had questions.

@psmnonna - Yes to Alendronate before Tymlos. When I was first diagnosed I couldn't get into the OP Clinic, and went to a different rheumatologist. He did lots of testing, which I appreciated, but was very old-school in his treatment approach. I was very worried about being 58 and at a "high risk" for fractures so started taking it. It significantly increased the reflux issues I already had, so I stopped it after a few months & didn't go back to him! At my visit yesterday, she really left it up to me to let her know what I want to do about HRT. She knows I want options, so gives me info to let me decide. She said Evista was the safest option with lowest risks & she prescribes it up to age 70. My gyn I saw last month specializes in pre/post menopause and she doesn't think there's much difference in HRT and BHRT - she is a very "by-the-book" doctor (her words!), and that's her opinion. She also said she has patients stay on HRT their entire lives. I've got to figure this part out & let one of them know.

@mayblin is an excellent source of information on preserving PTH bone with HRT.

@seh801 Thanks for the reply! Glad you have an open minded Dr. So far I haven't found a rheumatologist or endo who will support HRT or BHRT of any kind. Not even open to discussions on it, based on the WHI study from 25 years ago. (sheesh!) Now on a wait list to see a GYN who specializes in menopause and hormone therapy. I would love to just have the conversation about that option without the flat out NO when I suggest it!

Glad you had such a great response to Tymlos after Alendronate! There is evidence that taking a bisphosphonate first can blunt the effects of the bone building of the anabolics. Tymlos was able to bump you up into the osteopenia range which is all you can hope for!

I'm going to do some research on Evista. Maybe that will be the way I go if HRT is not in my future.

Great results with Tymlos! You have a great physician offering all the possible options. I wish all of us have physicians with open minds.

Please keep everyone posted with your journey.

Thought I'd update on things since my last post here.

Now on month 20 of 24 of Tymlos. No clear decision yet as to what I'm going to push for when Tymlos is done. As stubbornly as 3 endos and a rheumatologist have vetoed HRT, I'm going to be just that stubborn in vetoing Prolia and bisphosphonates.

But I'm strongly in favor of starting HRT as everything I've read and researched point to it being a help and not a hindrance for women of any age. "It's never too late to start" is the mantra from many of the podcasts I've listened to. I decided I needed to check things off the list myself in order to try and pursue HRT. Since I'm beyond the proper age limit and years since menopause, any doctor I've seen so far has been strongly against it. After 2 months on a wait list, I was able to see a cardiologist to have some tests done. I was (and still am) having heart racing issues after Tymlos injections. Two stress tests, an echocardiogram and calcium CT score later all checked out well. No issues except for a heart murmur that was not concerning. He did, however, prescribe a statin since my blood cholesterol has steadily risen since beginning Tymlos. Total cholesterol was at a staggering 280 last January and based on that number he gave the statin. Interesting thing is on that very morning of my appt. with him, I had another fasting blood test and the results of that one showed my cholesterol dropped from 280 to 206 between January and May! I don't know how I did it, but I'm going with it and do not need to take the statin at this point. Cardiologist said to retest in 6 months to make sure it wasn't some sort of error or fluke. He also said he didn't know enough about HRT to have an opinion, so I'm also going with my own recommendation (HA!) and my test results which show my heart is fine and shows no increased risk of cardiovascular events or stroke. Check that off.

After another wait list with a gyn who specializes in HRT, she was the first Dr to actually listen to me. Although she had never heard of Tymlos, she did have knowledge of osteoporosis and hormone therapy. Even though HRT is not prescribed in the US as a treatment for osteoporosis (it is in other countries) it is prescribed to alleviate the vasomotor symptoms. So since I never stopped having hot flashes, night sweats and insomnia she did prescribe a weekly low dose Estradiol patch at 0.025 and 100mg of bioidentical progesterone/day. I asked if I should get any hormone testing done and she said I could if I wanted to, but based on the years since menopause it wouldn't make a difference. Basically, I have next to nothing left of estrogen. She said any increased level of hormone at this point would probably be a shock to my system so let's start low and slow. She also said that after this long the HRT would not help with the osteoporosis, as in not help to increase bone growth. Even so, I'm hopeful that it will at least preserve what I have been able to add with Tymlos and at least maintain. Fingers crossed! It's only been a few days since I started so not much difference to detect yet. I am sleeping a bit sounder and not waking as often, so maybe there is progress starting??

I'll be very interested in seeing my next dexa score in 2026. Also will be an interesting conversation with my anti HRT endo when I tell her what I did. I'll probably get an office referral and detention. But I've always been a bit of a rebel.
Cheers!